FAQs

We are a U.S. based international not-for-profit organization started in 1994 by family members and persons diagnosed with Transverse Myelitis. The TMA is dedicated to the support of children, adolescents, and adults with a spectrum of rare neuro-immunologic disorders including: ADEM, NMO, ON and TM. The TMA currently has over 10,000 members from more than 80 different countries. You can find more information about us here.

To support and advocate for individuals and their families diagnosed with rare neuro-immunologic disorders of the central nervous system

To promote awareness and to empower patients, families, clinicians and scientists through education programs and publications

To advance the scientific understanding of and therapy development for these rare disorders by supporting the training of clinicians-scientists dedicated to these rare diseases and by supporting basic and clinical research

Our goal is to improve the quality of life of individuals with these rare neuro-immunologic disorders.

All of these conditions are immune-mediated disorders of the central nervous system (brain, spinal cord and optic nerves). The immune system is the body’s defense against foreign invaders, such as viruses and/or bacteria. Normally, the cells that are a part of the immune system have the ability to distinguish an infectious agent from a person’s body; however, sometimes some of these cells become ‘confused’ and mistakenly attack an organ within a person. This is known as autoimmunity. Health care providers sometimes use the term ‘inflammation’ to describe this occurrence. Inflammation refers to situations when immune cells invade human tissue. For example, if there is inflammation in a spinal cord, then immune cells have invaded the spinal cord. Inflammation can be normal, such as during an infection, or abnormal, such as during autoimmune attacks.

The diagnosis given is based on the region of the central nervous system affected. When the spinal cord is affected it is called Transverse Myelitis (TM), and when the optic nerve is affected it is called Optic Neuritis (ON). In Acute Disseminated Encephalomyelitis (ADEM) and Neuromyelitis Optica (NMO) there are various patterns of organ involvement, and in some disorders there is the potential for recurrent events. During an immune mediated attack on the central nervous system, the insulation around the wire (myelin) or the wire itself (axon) can be damaged. When an inflammatory attack damages the insulation, the damage is referred to as demyelination. When the myelin or axon of a neuron is damaged, it is unable to conduct a signal. The symptoms are dependent on which axons are affected. For example, if the wire that carries visual information from the eye to the brain (optic nerve) develops demyelination, then signals are not carried to the brain efficiently resulting in a person having blurred or lost vision (ON). If the demyelination occurs in the wires sending motor signals to a person’s legs, then the person has weakness and difficulty walking. It is important to know that these symptoms can develop in isolation or in the setting of an acute illness, vascular event, trauma or an underlying disease.

The Transverse Myelitis Association publishes newsletters; an annual journal and we also have a blog where we share latest news and updates. Please join us and become a member in order to read the latest news and receive our publications via email.

Very little is understood about the disease mechanisms for these disorders. It is believed that a person who develops one of these rare neuro-immunologic disorders likely has a genetic predisposition to auto-immunity, and that there are environmental factors that interact with these genetics to trigger the disease. The specific genetics in each of these disorders is not completely understood and environmental factors have not been clearly identified. In the case of Multiple Sclerosis (MS), a relationship to decreased levels of vitamin D and diminished exposure to sunlight are being considered, but no other factors are suspected for these other neuro-immunologic disorders. It is believed that the immune system response could be to a viral, bacterial or fungal infection, and in the case of TM, a significant number of people have flu-like symptoms, a respiratory infection, or a child might have an ear infection preceding their attack. This immune response might explain why the immune system was revved up. However, it does not explain why the immune system becomes dysfunctional and attacks ‘self.’ Additionally, no one understands why some people have a good recovery from an attack, while others have no recovery.

It is believed that a person who develops one of these rare neuro-immunologic disorders likely has a genetic predisposition to auto-immunity, and that there are environmental factors that interact with these genetics to trigger the disease. The specific genetics in each of these disorders is not completely understood and environmental factors have not been clearly identified. In the case of transverse myelitis, for example, it does not appear to be familial.

These disorders are very rare, and thus, most of our support groups cover a large geographic region, such as a state. We do have support groups across the United States, and we have some very active support groups in countries around the world. As all of our support group leaders are volunteers, there is great variability between our groups and the activities in which they are engaged. Some of our groups have meetings, while others of our support group leaders make themselves available for phone calls or emails. You can find all of our support group leaders by visiting our Support Groups page. We would also encourage you to get involved. If you are interested in being a support group leader, please get in touch with us, and we will explain to you how to get a group started in your area.

To learn more about our Support Groups and where they are located please visit Support Groups on our site.

There are two Centers of Excellence – The Johns Hopkins Transverse Myelitis Center in Baltimore, MD and University of Texas Southwestern in Dallas focused on clinical care and research on TM, ADEM, NMO and ON. A list of the physicians at these centers can be found here.

Medical professionals who will best understand your condition if you are not located near the Centers are those who specialize in Multiple Sclerosis. Neurologists at Multiple Sclerosis centers or academic medical centers tend to see more patients with ADEM, NMO, ON and TM compared to a general neurologist.

The TMA hosts symposia and conferences in partnership with organizations including the Johns Hopkins Transverse Myelitis Center, the UT Southwestern Transverse Myelitis Center, and the Johns Hopkins Project RESTORE. Several of them have been captured on video and are available as a resource to our community. We encourage you to browse them and learn more about diagnosis, symptom management, therapies, long-term care and research efforts currently underway.

It is important to note that regardless of whether the inflammatory attack of the spinal cord resulted from ADEM, NMO or TM, the symptoms are managed in a similar way. When reading an article or watching a video about spasticity management in TM, the strategies explained will also be applicable to individuals suffering from ADEM, MS and NMO.

Please also join us and become a member so we can share more up-to-date information with you. If you have specific questions, please contact us at info@myelitis.org

The TMA is an organization dedicated to advocacy for those who have these rare neuro-immunologic disorders. Our membership includes persons with these disorders, their family members and caregivers, and the medical professionals who treat people with these disorders.

Becoming a member is very easy and free through our Become a Member online form powered by TraitWise. You will receive an email confirmation with a user name and password so you may be able to share more information about your disorder and experience. We operate exclusively on the basis of charitable donations, and we hope that you will make the TMA a part of your generous giving.

Being a member of the Transverse Myelitis Association offers many benefits:

You will receive our newsletters and journals, which include articles by leading researchers and clinicians about these disorders, as well as articles written by people who have these disorders who share their experiences.

You will learn about the latest research on these disorders, as well as have the opportunity to be recruited for clinical trials and studies.

You will be given the opportunity to share information with the world’s leading researchers on these disorders in order to help them better understand these conditions.

You will be notified of continuing medical education and other educational opportunities, such as our symposia.

If you have a child with one of these disorders, you will be notified about our family camps.

If you are a clinician/researcher, you will receive information on opportunities for grant funding and fellowships focused on rare neuro-immunologic disorders, as well as be connected to a larger network of physicians and researchers with the same focus.

You get to participate in a registry using an online medical and health research tool that uses the principles of gaming to engage you as you learn about your health and how you compare to others who answered the same questions. Furthermore, you will be able to create your own survey questions that others in the community can answer.

You will be offered the opportunity to become a part of a vibrant community that offers networking and support.